Thanks Dori. My mom lives with me and DH so I’ve been the one to help her with set up and make sure she learned everything. I drilled her each day we drove down for training and finished training in 6 days. She is just real discouraged because she absolutely hates in-center hemo because it wipes her out. She is at a new clinic now where she’s talked the doctor into 3 1/2 hrs instead of 4. Her numbers are good so he let her do the 3.5. We have 3 weeks until her vocal cords lose the swelling to decide whether or not to get a new surgeon, or go get a second opinion. I did print out the report about intraperatoneal bleeding and emailed it to the PD nurse. Hopefully, one more surgury and we can get back to CCPD! Otherwise, I told her not to fret that we have other options and I would love to “poke” her everyday!..lol (she didn’t think that was funny)…we’ll see.
Your mom is very lucky to have such a devoted daughter, and I’m glad to hear that you’re able to ease her concerns.
Have the doctors/nurses tried flushing the catheter with heparin or even Urokinase or Streptokinase to break up the clots and fibrin? There may be something better now, but I remember they used these medicines in my old dialysis clinic.
Is there any possibility that her body could be having an allergic reaction to the material that the catheter(s) is made of and that could be causing the clotting and fibrin?
When we were trying to flush it, I was adding 2cc of Heperin to a 2000ML bag. She could take in the fluid, but nothing would come out. The PD nurse even took off the transfer set and used a syringe to flush but was having resistance when trying to draw back the syringe. There’s a lot of old blood still in her. I’m more concerned as to why she’s having excrutiating pain after only a 100-200 cc of dialysate fluid?
I had simular problems with my PD cath in the begining. I had what is called an omentum wrap that had to be removed. I also had lots of fibrin clots, used lots of straight heparin and Urikinase to break them up. there were times it didn’t look like I would get to do PD. however it did get straightened out. However I was not able to use CCPD because I pcoket fluid. WHen I did exchanges I would have to do stretches to get all the fluid out of me… I would also suggest getting a permacath placed in her chest. That will save her alot of pain with changing IJ’s often.
LSB
Kim, both Beth and Leafsunbear have a good point. Heparin is a blood thinner, but the “kinase” drugs actually can dissolve clots, and it’s worth asking your mom’s doctor if that would be helpful in her case. If she has an omentum wrap, as Leafsunbear had, surgery is needed. The omentum is a “curtain” of extra tissue inside the abdomen that can get in the way of a catheter. It can be removed so it’s not a problem any more.
These are all good points for me to ask the doctor about. My mom is 75yrs old and when she got to do exchanges (either manual or cycler), she was practically having to do calisthenics to get those little pockets of fluid out! Question about the permacath. Is that the same as a presternal catheter because I’ve already been down that road and they won’t do it. I’d have to find another doctor to do that. It seems her pain is coming from wherever the tip of the catheter is. What is an “IJ” and is there any info on the omentum wrap? Thank you all for the information.
No, a permacath is for hemodialysis. It’s a central venous catheter usually placed in the internal jugular (IJ) vein in the chest. It’s tunneled under the skin.
There are different types of HD catheters. A permacath is a catheter for HD that is intended for longer term use. Vein mapping can be done to find out where the best place would be to create a fistula or graft rather than assuming someone can only have a catheter because he/she would not be a good candidate because he/she is older, female gender, or has diabetes (common reasons why catheters are placed).
No matter the type of catheter used, people often get less effective dialysis. Risk of infection and clotting are higher and patients can’t shower because they’re not supposed to get wet. Having a catheter can cause the vessel it’s in to narrow or close reducing or eliminating blood flow to the area of the body that the vessel serves and making it difficult/impossible to place an access in that arm.
Oh, okay. She already has a catheter in her jugular vein. It comes out above her breast. This is what she’s been using until we can get the PD to work, then the plan was to take it out…but, she’s even clotted those and had a few replaced. If we can’t get the PD to work, she’ll have to get a fistula and still use the one in her neck until the fistula matures…then, it’s on to Nxstage!
Be sure that her doctor knows about this website and these resources that can be accessed on it related to AV fistula placement.
http://www.fistulafirst.org/
@ beth,
I have seen you say this more then once I think.
“patients can’t shower because they’re not supposed to get wet”
This is not true, I shower all the time. Yes I can not get the catheter wet, but that is what tape and Saran wrap are for. I also use one of the hand held shower heads to help keep water away from the catheter. To say that we can not shower at all is just not true. Maybe say that showering is more of a task and extra care needs to be taken to insure that the catheter does not get wet. Use of Saran wrap and tape and not allowing the water to run near the catheter. Maybe that would be more correct and helpfull. I am very lucky to have my permacath. Without it I would be dead a long time ago. I have had it over a year now. Yes they are not the greatest option, it is why I am using NxStage nocturnal. I can’t get decent blood flows on it, so short dialysis is out of the question. But I shower and I even wash my hair. Washing my hair involves holding my head upside down and keeping the water away from the catheter too, but it can be done…
LSB
I wasn’t very precise in my comment. What I probably should have said is that it is important not to get the hemodialysis catheter or dressing wet. I would encourage patients to talk with their doctor or nurse about catheter care and what to use to keep the catheter and dressing dry when bathing or showering.
@ Beth, thank you… some people use Tegaderm to keep it dry when they shower. I use non-microwave safe saran wrap for mine. My doctor said to use a plastic grocery bag…
LSB
thanks for all the wonderful information. My biggest concern with all this is the pain? I’m afraid that even if we got the cath working, she’d still have the pain issue? Has anyone experienced that kind of pain before?
Yes I have, it would happen mostly when drained out, but sometimes just during the day. It just kinda stopped though, so I am no help there…
LSB
my mom had surgery yesterday with the intentions of flushing immediately when we got home and until the fluid ran clear. I reprogrammed the cycler to do 5 exchanges of 500ml after the initial drain (which was only 25ml of the 200 the doctor sent her home with). First fill went in okay so I bypassed the dwell and tried to drain to see if the cath was working. Only got 245ml back out before low drain alarms. Bypassed the drain after an hour and did the next fill that we left in for 3 hrs. Next drain only 145ml then more alarms! At that point, my mom was so discouraged I disconnected her and called the PD nurse. We decided not to put any more fluid in so we wouldn’t risk a leak. Today, I called the surgeon who basically told me that they were done with us and there was nothing else they would/could do. Told me that they had it working perfectly in the OR and the fluid was clear. Well…then what is all this tissue and chunks of meat in the tube from? Today after incenter hemo, I tried a manual exchange and wasn’t too sucessful so we headed down to the PD nurse. She took off the extention and asperated the cath with saline and the first draw back with the syringe sucked out this big, long stringy wormy looking hunk of tissue! YUCK! But, we got it working again and will try another manual flush tomorrow continuing for two weeks once daily. I cannot believe that my poor mother has had to go through all this just so she can do PD! If this doesn’t work, a trip to the Cleveland Clinic could be in the future? I’m praying this 6th surgury since July 3rd is the last! Kim
Kim,
Have you tried using heparin in the bags of dialysate to help dissolve the fibrin from the surgeries? Check with your PD nurse to see if that might help.
2cc’s per 2000ml bag every time we do a manual flush. I’ve flushed it every day since we got it unplugged but we never seem to get anything on the initial drain? I know hemo will take a bunch of fluid off her, but all? So far, we’re getting out what we put in when we flush, just not the 500ml she carries with her for the 24hrs and the fluid is still tinted and not running clear. Still keeping our fingers crossed this will work and she’s not getting any pain either which is encouraging!
I didn’t want to start a new thread so I’m going to post here. My mom has gone back to using the cycler since the last surgery in Oct. Everything was going good for awhile but she was still having a lot of edema so we were doing a mid-day exchange with a 4.25% and then leaving her dry until bedtime because she was absorbing the 1200 that was left in her by the machine. She is now experiencing pain in her shoulders and upper abdomen when draining. She gets some comfort with a heating pad and after she is full. We think that maybe she has some pockets of fluid that aren’t getting out which adds to the total amount of fluid she has making it feel like she’s overfilled. We are going to get a CT scan this week with the dye to find out what’s going on…but since this all started, she’s been through a lot of pain when she shouldn’t have any at all! Any suggestions? I’m desperate!